OP0302-PARE THE INTERNATIONAL MAP OF AXIAL SPONDYLOARTHRITIS GLOBAL REPORT: SUPPORTING THE INCLUSION OF THE PATIENT PERSPECTIVE IN POLICY AND CLINICAL PRACTICE
Authors: J. Lowe, M. Garrido-Cumbrera, J. Davies, A. Phoka, L. Wermskog, L. Christen
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Axial spondyloarthritis (axSpA) is a chronic inflammatory rheumatic musculoskeletal disease that can lead to chronic pain, structural damage, and disability. It often has a significant physical impact, causes psychological distress and can disrupt every aspect of a patient's life. While scientific research in axSpA has grown significantly, the patient perspective remains insufficiently explored and the disease burden continues to be underestimated. The International Map of Axial Spondyloarthritis (IMAS) is a research initiative of the impact and burden of axSpA from the patient perspective, identifying the unmet needs of axSpA patients and exploring impact beyond solely the physical symptoms. <h3>Objectives</h3> By producing an accessible global report on the results of IMAS, ASIF aim to provide its member organisations with much needed, robust evidence of the impact of the disease. The report will be used to raise awareness of the reality of axSpA, particularly amongst healthcare providers and policy makers; with the intention of incorporating the patient perspective much more into clinical practice and policy. The report also provides patients and their carers with a better insight into axSpA experiences around the world. <h3>Methods</h3> This research is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville and Novartis Pharma AG. ASIF and its members have supported recruitment of survey participants from 27 countries across Europe, Asia, North, Central and South America, and Africa. In total 5,557 people completed the survey, providing a unique insight into how axSpA effects daily life. IMAS collected information through a comprehensive questionnaire of over 120 items on socio-demographics; behaviour; disease diagnosis and characteristics; comorbidities; psychological distress; healthcare utilization; treatments; disease activity; physical activity and limitations; working life; relationships; and the hopes and fears of patients. The ASIF IMAS sub-committee reviewed the global dataset results and agreed the scope of the global report. The IMAS scientific committee also reviewed the result, identifying key findings. ASIF held webinars with its members to seek their feedback on the results; asking them how they would use such a report how it can support their work. <h3>Results</h3> 5,557 axSpA patients participated in IMAS. The mean age was 43.9 years, 55.4% were women, 46.2% had university education, and 48.5% were employed. 20.6% were on sick leave (temporary or permanent), 71.4% had difficulty finding a job due to axSpA, and 71.0% reported work-related issues. Patients' mean diagnostic delay was 7.4 years, disease activity measured by the BASDAI was 5.4 (out of 10), and risk of poor mental health measured by the GHQ-12 was identified in 59.4% of respondents. In addition, patients had a mean of 2 physical comorbidities. The report, which will be translated into a number of languages, includes data on all topics that were collected by IMAS. But at the request of our members, it focusses on the journey to diagnosis; physical and mental health; daily life impact; accessing treatment and care; and hopes and fears. Gender and regional differences are reported on in each of the chapters. <h3>Conclusion</h3> IMAS has shown the global profile of axSpA patients, quantifying and highlighting unmet needs, including unacceptable delay in diagnosis, high disease activity, work-related problems, and poor mental health in axSpA patients worldwide. The global report on IMAS will provide ASIF's members with empirical evidence of the impact of axSpA on a person's life in order to support their awareness and advocacy work. IMAS was recognised when it won the EFPIA Connecting Healthcare 2021 Awards for its ability to bring patients and medical professionals together in an initiative aimed at improving the quality of life of people living with axSpA from around the world. <h3>REFERENCES:</h3> NIL. <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> Jo Lowe Grant/research support from: I have not personally received funding, but ASIF has received funding from Novartis, UCB, Lilly, Abbvie, Boehringer Ingleheim, Pfizer, Janssen, Marco Garrido-Cumbrera Grant/research support from: My research is supported by Novartis Pharma AG., Jo Davies Grant/research support from: I have not personally received funding, but ASIF has received funding from Novartis, UCB, Lilly, Abbvie, Boehringer Ingleheim, Pfizer, Janssen, Andri Phoka: None declared, Lillann Wermskog Grant/research support from: I have not personally received a grant, but Spafo has received funding from Novartis, Abbvie, UCB Pharma, Takeda, Pfizer, Lilly, Employee of: Yes, Novartis., Laura Christen Employee of: I am employed by Novartis Pharma AG.